Welcome to my world, able-bodied people
Sarah Trick on living with a disability that puts her — and her caregivers — at higher risk of COVID-19
As a disabled person, I am at high risk of severe illness or death should I contract the virus responsible for COVID-19.
I have both cerebral palsy, which is a neuromuscular condition, and a history of childhood asthma. Both these things mean I need to take extra precautions.
But there's something that scares me more than the virus: losing access to the attendant care I need. If I get COVID-19, I may or may not die. If I lose access to care, I will definitely die.
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I have caregivers who assist me three or four times a day. I need help for all activities of daily living — such as getting in and out of bed, going to the bathroom, getting dressed and getting meals.
The work my attendants do requires close contact. There is no way we can practise social distancing from one another.
I am self-isolating, but needing to have contact several times a day means I'm vulnerable to anything my staff brings in.
I have already had staff self-isolate because they're scared of bringing the virus to me. Although this is good, it puts more stress on the staff who are available.
I manage my own caregivers so don't have many backup options, and can't go without like some are choosing to do. These people are not only employees, but friends.
If I lose access to care, I will definitely die.- Sarah Trick
Every time they come to work, they put themselves and their families at risk. Some are in high-risk groups themselves.
I worry about them, and I worry even more about my friends who live in congregate care settings such as nursing homes or supportive housing arrangements. Already I'm hearing that they are being told their staff may not come to work, that their services may be reduced, and that their staff will not have access to personal protective equipment.
Attendants working in these settings see several clients a day. If one is infected, they will spread it to everyone else.
Should I develop symptoms, I have another concern. I don't know how I would get tested for COVID-19, since my only options for getting around are Para Transpo or conventional transit, which we're asked not to use if we suspect we have the virus.
Not only is my care situation precarious, so is my employment. I've been working as a freelance journalist since my last contract ended. I don't know when I will be paid for work I did before this started, and it's harder to find new work and apply for new permanent jobs, since no one is hiring.
What I expected would be temporary unemployment or gig employment might stretch out for months or years.
Despite this, I'm staying calm. Many of the problems the world is now confronting, I've been dealing with my whole life — how to deal with adversity, how to adapt to limited resources, how to ensure your basic needs are met when most of the world is inaccessible to you.
Rather than being in a new world, it seems like able-bodied people have joined mine. Welcome. I'm happy to show you around. I only ask that you look out for us, not give up on us as doomed or let us die.
Sarah Trick is a freelance journalist in Ottawa who uses a wheelchair.